Why are urologists dismissive about Decipher?

My urologist - a surgeon - ordered the Decipher (0.56) and he went over that and my biopsy results at the same appointment. I didn't request the Decipher and had never even heard of it prior to that appointment. I don't recall any of the several surgeons (or ROs) I've seen locally, at MD Anderson, or the Cleveland Clinic being overtly dismissive of the Decipher test, but they all tended to focus more on my age (50), Gleason grade 7 (3+4, 6/12 cores), existing urinary issues, and negative PSMA scan when discussing treatment options.

@matthewdore

69 years old at diagnosis. PSA 4.6, MRI showed no lesions, Biopsy produced 2/12 cores at up to 30% Gleason 3+4 (3 other cores had some abnormal cells that could not be confirmed as cancer). Per their protocol, the urology clinic automatically sent a sample to Decipher.

My urologist presented three choices: Active Surveillance, Surgery, or Radiation. We discussed the options and settled on AS. Then…

The Decipher results came back at 0.84. We agreed AS was no longer a reasonable option. I was sent for a PSMA-PET scan which indicated the cancer was confined to the prostate.

The urologist offered to set up interviews with both an RO and a surgeon. I had already done some homework regarding these options and was leaning toward radiation, so I met with the RO. Between the RO and the oncology nurse, we had a very productive 2.5 hour meeting (my wife was present for most of it). The decision was to do 28 sessions of VMAT which was later increased to 39 sessions after my mapping session was completed. Fiducials and SpaceOAR were inserted prior to the start of treatment. No ADT.

It has been almost 2 years since the treatments were completed and my PSA has dropped with every test (latest = 0.26). The RO has declared me to be in remission and told me I was one of their “success stories”. As for side effects, they were minimal during treatment. I had ED for 20 years prior to my diagnosis and that became a bigger challenge post-treatment, but the combination of Trimix and a VED has made me a “new man”. There have been no other significant post-treatment side effects.

I am living a normal and active life. I feel great and grateful.

As an aside, I have a friend who was also diagnosed 3+4 about the same time. He opted for HIFU which failed. A year later he opted for IMRT (without a rectal barrier) plus ADT which appears to have taken care of the cancer, but left him with rectal burns. No fun.

A 50s friend had Decipher after Gleason 10 that confirmed having RP. I had Gleason 7 but PET indicated node positive, so no need to guess treatment options. At 73, I chose ADT and radiation.

My husband, who is 80) had a rise in psa from 2.4 to 4.4 to 6.4 which lead our GP seding him to a Urologist who prescribed a special MRI which was (unexpectedly for us) showed a very high probably of cancer throughout the prostate and thru the capsule. That was followed by biopsy which showed Grade 5 Gleason, Stage 4 advanced prostate cancer. The Urologist spoke with us and ruled out surgery and ordered radiation. When the radiologist saw the results of the MRI and biopsy he ordered the Decipher which was .99. He immediately brought in another member of the team - the oncologist who took over my husbands care (all three work closely together at the Jellison Cancer Institute in Sarasota). He sees the oncologist every three months. She has prescribed Abiraterone (1000 mg) and Prednisone (5mg) daily. We also see the urologist every three months who give a dose of Lupron Depot. Per the oncologist, my husband can only take the abiraterone/prednisone until Jan. 2026. He will also stop Lupron Depot. Then the oncologist will follow up with him for psa tests. My husband has decided regardless of what happens he has chosen to not have any further treatment. The three doctors work together all of the time and are a great team as is our Jellison Institute. And for us right now, we just want to enjoy whatever we can!

I don’t see you mention that he got radiation. That would be really important with this case if he got radiation and the drugs . Hopefully you are getting PSA tests every 3 months along with The Lupron. What’s the most recent PSA test you’ve had and what were the results after the Radiation and drugs?

If he’s having a lot of fatigue problems with abiraterone Increasing the prednisone helps a lot. Or other side effects really causing him problems, If you bring it up, we may be able to help. Be aware that exercise is critical when it comes to managing the fatigue. Just walking a couple miles a day can make a major difference into fatigue and depression due to taking the drugs.

A Gleason score consists of two numbers, In your case, one of them is a five and I assume the other ones either four or a five. That would require him to be on ADT for 18 to 24 months, But you don’t mention when he actually started so it’s hard to tell how long he will be on it.

After he’s done with Lupron and abiraterone There is a drug he could take that would have very few side effects. That would really keep the cancer under control. I know a lot of people on that drug, including me. It is Nubeqa (Darolutamide). Sometimes the doctor will give you Xtandi (Enzalutamide) Which has a lot more side effects, So be aware of the fact that there is a drug he could continue with.

My father died of prostate cancer at 88. The level of pain he was in at the end was So bad that he was unable to communicate because of the drugs to manage the pain. He had all of his Molars ground down and crowned without Novacaine when I was young, end stage cancer was too much.

I have read many comments in this forum that if a Decipher score is high, then ADT may be necessary. I didn't doubt, I took it for granted that this is correct.
But because the discussion topic is "why are urologists dismissive about decipher," I decided to check if a possible reason can be that there is an alternative or equivalent test?
It is therefore only by chance that I found out: Decipher can guide a decision if adjuvant radiotherapy is necessary, as an addition to a primary treatment like surgery.
Conversely, Prolaris and Oncotype DX both predict the risk of biochemical recurrence; the latter can help determine whether hormone therapy is beneficial.
I was somewhat unhappy that my care team didn't order a Decipher test before advising me to go SBRT + ADT/Orgovyx. Not anymore because it wouldn't have been a factor in the hormone therapy decision; Oncotype DX would.

I was put on Active surveillance earlier this year. The urologist at first was dismissive about my elevated psa, thinking it was likely due to inflammation. He said to get the psa tested again in a few months. I did and psa was the same level about 4.2.
I asked if i could have an MRI, he agreed. It showed a lesion likely to be cancer. A biopsy was then done with 4 cores 3+3 and one core 3+4.
He suggested Active Surveillance for quality of life. He said a study was done at the John Hopkins instititue of 1800 men on actice Surveillance for an average of 15 years. Only 4 of the men died of prostate cancer, while 48 percent eventually underwent treatment and 52 percent remained on A.S. He then recommended a Decipher test as I was about to leave. The Decipher turned out to be high risk. on the follow up visit he then recommended surgery.
I told him i wanted to wait another 6 months to a year and have another MRI and biopsy. He then got a little angry and combative and asked me what was the point of me coming to see him at all, as if i was wasting his time. I told him I was hopeful that my cancer would regress due to going all out on healthy lifestyle choices and would like to wait for another MRI and biopsy. This goes along with quality of life in my view.
He asked me why I originally even wanted a psa test and the subsequent mri and biopsy. Isn't it normal for me to want to monitor my condition and progress? Do some urologists use the decipher as a tactic to get more surgeries scheduled? Kind of a bait and switch like tactic.
First dismissing any cancer likelihood, and then it's urgent to operate?
I realize some may feel the need to argue this as another conspiracy theory, but others might feel the same apprehension as me. As a side note, when i got to the consult today, the nurse said the doctor wanted to perform a cystoscopy on me. I said I did not know anything about that but she said the doctor wanted it. She then filled me with lydocain. She came back a couple minutes later and said she gave it to the wrong patient.

What is the result of the Decipher test ? If it is really high, there is no scientific base for expecting it "regress". High Decipher score means that your cells have high rate of mutations and that can not change unless you have some genetic engineering done on your prostate gland cells.
Yes, you can decide to "wait and see" and use that time to do tons of research and decide what your next step will be - surgery of radiation therapy. Personally - I would not wait too long. With high Decipher you are risking your cancer becoming even more aggressive and cribriform and IDC developing and at that point you will have much narrower options for a treatment.
At this point you definitely do not have to have surgery, you can opt for radiation or even some focal therapy, but you have to start doing research and do not wait too long. You have to keep in mind that biopsy can miss some even more aggressive cells that are maybe already there 😟. I understand that perhaps you do not trust your doctor any more nor does she instill confidence in you - just find a better doctor and second opinion is always welcome anyways. If you can go to urologist at some university hospital or at Cancer Center of Excellence.

Wishing you the best of luck 🍀

A high decipher test is a real warning. Waiting 6 months would be just plain foolish. Another person posted in this forum that they had a Gleason 7 and the doctor put them off for 6 months. When they came for further treatment, the cancer had spread and was outside the prostate. You don’t want that to happen.

Listen to the doctor they are giving you great advice.

hi, dgd1953. the Decipher test indication of high risk is prognostic for metastasis. So your cancer is planning to escape the prostate. The test is most often used to determine if you should take hormone repression ADT to slow the spread of cancer. Decipher is also useful to determine the strength (GYs) of radiation best for destroying your cancer.
In your situation, I can't see why you are directed to surgery instead of radiation, but maybe others, more knowing, will weigh in.
Your impulse to keep waiting is natural, and sometimes dangerous. I'm not sure why the oncologist didn't have the sense to explain his recommendation. It couldn't have been his finest medical moment.
So you have this cancer that can threaten your whole body, but you have the chance to limit the battleground, which increases your chance of winning.
Gather your records and find or ask the urologist for referrals to see a surgical oncologist and a radiation oncologist. I lean toward radiation and early treatment. But, after talking to oncologists you'll have a broader view to aid your decisions.
Don't be agreeing to cystoscopies or other treatments without knowing why. Sometimes they get our charts mixed up.
Your doctor should welcome your questions and understand your resistance.
Bless your journey.